What’s it like to feel
certain that you’re sick? Really, truly sick, and have doctors
tell you it’s all in your mind? I woke up itching. I thought there was mites in my skin
which is the creepiest feeling. When I first was looking at my sores I
could see projections coming out of them. A little bit of color
like I’m super healthy. I’m sick with this disease,
it’s called Morgellons and it’s really weird. No one believes it. Morgellons. A mysterious infection that,
according to some researchers, affects tens of thousands of Americans. Its symptoms are strange and
other-worldly. Enormous skin lesions with multi-colored
fibres of red and blue and green growing out of them. I remember when I first. Heard about Morgellons but
I didn’t believe it. I didn’t want to have
something controversial. I wanted to have something that
has existed before, has an answer. But all my searches kept coming
right back to Morgellons. But here’s the thing, according to
the Centers for Disease Control and Prevention, Morgellons does not exist. Many doctors believe that Morgellons
is a delusional disorder. That those skin lesions, like the ones
that Katy has, are self-inflicted. Doctors, in the beginning, thought that I probably had
a mental problem when I showed up. They all thought I was nuts. And they would instantly just
be in the role of we can’t help. I guess the tension in all of this is
that Morgellons doesn’t officially exist. That the CDC says it didn’t exist. I think it makes a lot
of us a lot more sick. The anger of being categorized
like that and then neglected. One doctor who does treat hundreds of
Morgellons patients is Doctor Raphael Stricker, who depending on your view of Morgellons
can be one of several things. A savior, a medical pioneer or a quack. Doctor Stricker says Morgellons
is linked to Lyme disease. So these fibers that are seen
in Morgellons patients, they’re not some worms or lint,
or something from outerspace. What they are is they’re fibers that
are produced by the patients own cells. And for some reasons these patients with
Lyme disease over produce these fibers and then they come up through the skin and
cause these weird lesions. So the bacteria that causes Lyme is called a spirochete,
transmitted by the bite of a tick. We’ve looked at a number
of Morgellons patients. The last study I think had 25 patients
that had skin lesions with fibers. All of the patients, essentially,
had infection with the Lyme bacteria. But in a two thousand twelve study,
the CDC reported that there was no common underlying medical condition for
Morgellon symptoms. that the fibers found on patients
skin were mostly bits of cotton. Based on that though, they had been very skeptical about Morgellons. Dr. Stricker says the CDC study was flawed, in part because research subjects didn’t have to have Morgellons fibers in their
skin at the actual time of the study. So, maybe they didn’t
have Morgellons at all. Dermatologists who should deal with it,
have been told, “well, this isn’t a real disease and
they’re crazy. And they’re delusional,
and that’s all it is.” Basically what we’ve been doing
is showing that that’s not true. That these are people
who have a real disease. Marion Middelveen is a veterinary
microbiologist by training. She conducts research on
Morgellons with Dr. Stricker. Some of their work is funded by
a Morgellon’s advocacy group, called the Charles E. Holman Foundation I actually showed that lesions contained the Lyme bacterium. The way we determine if a person has
Morgellons or not is we look for the presence of cutaneous filaments
that are in or embedded in the skin. I can see some black strands, but couldn’t that have come of your dress? That couldn’t have come off the couch? Absolutely, can. And I think that adds to the confusion. And it’s only after a long time you can
see it clearly coming out of the body. I never brought in any samples. I learned quickly not to
show any pictures either. To doctors? Yes.
Pretty much if you bring anything in, you can expect a delusional
parasitosis diagnosis. Online, Morgellons becomes
a kind of sub-culture, and Katie has found friends there. Two of them decided to
come visit her in Seattle. Do you want to try this new
active lesion right here? On my face. Yeah show me, show me. There’s nothing really here. I can’t see but if she hadn’t torn that off, it probably would be Because it’s not really open With a scope, you can really see them. And you can feel like when they’re
swimming across my eye. And then it gets in the corner and
you can pull this thing out of your eye. I have those a lot. Every day, all day long. I’ll go wash my hands now. Yet, skeptical doctors argue that
Morgellens is a psychiatric condition. They often diagnose patients with what
they call delusional parasitosis. Practically every practicing dermatologist
will see Morgellens disease sooner or later Most of the patients that
are affected with Morgellons are women. They’re clean, they don’t
have any substance abuse problem and out of no where, they start feeling
crawling, biting, stinging sensations. They start becoming very much
worried about parasites. Many people with Morgellons go to
dermatologist, they don’t want to argue with the patient, it’s very unpleasant
against what the patient is saying. So often times one way to just take
care of the situation in a way that the patients are not unhappy,
no argument and they will go home quickly and
happily is to give them antibiotic. Those measures practically never lead
to a cure, it is commonly done. I hate to say, in a way to get rid
of the patient from the office. Sometimes Dr. Ku gives these patients a prescription for an antipsychotic medication called
Pimozide and sends them on their way. Ideally there’s
a medication called Pimozide. It’s actually a medicine for
Tourette’s syndrome. Pimozide works very well
for these symptoms and often lead to great improvement
in symptoms, if not cure. So all these things are the herbal
supplements, antibiotic and everything that I’ve kind of
collected over three and a half years, like vitamin C. I have CBD tincture. Turmeric, these guys. Here’s another topical I love,
but it’s for dogs, and that’s. kind of controversial. This is actually dewormer,
what I buy from the farm store. None of this is the cure. Over the past three and a half years, I would imagine that I’ve
spent at least 50 grand. Do you ever feel like we’re just warriors on the battlefield, crawling through were like try some
thorax or silver, colloidal Silver. When you see everybody in the groups then you’re like yes I have that same exact You’re like everybody has the same thing, you get to see
everybody’s pictures. You start talking and opening up. and going down the rabbit hole. Exactly you get your microscope and
you examine things. You have samples, I can’t tell you
how much I have of four years, this is 2014, this is 2018, whatever. It takes your looks,
it takes your life, your wages, your quality time with your family and
your daughter. And then to not have it recognized. If you have Cancer, if you have AIDs,
or you have anything else, well this is what you have. But no, with this shit, we can’t help you. Joan: Now this looks like hair from my head
Katie: It does. but it’s not. How do you know? You just know. Like this came out of your skin? Was it moving when you saw it? Yeah. A huge wad will come out in, in a clump. And then you get the pressure relieved and the pain stops. Here’s another one of those white things. Give me the plaster. There’s a red one. You’ll like this one
Look at this one. But these all came from the same place. It looks like lint. You guys are all really. You were to convince me, and
I can feel in you that you told people these same things before, and you haven’t been believed. Morgellons is a disease that
doesn’t officially exist, so there aren’t official doctors. Do you think that leaves space for
people to be taken advantage of? There’s so many different ways to,
you know, people choose to go about it and they are getting ripped off. Many of my friends have travelled
to other countries, other states. Some of them have experienced
some really crazy things, like, hooking them up to a big battery,
scanning their bodies, and that not only does it rip them off when they have nothing left but then they get home and it’s one more fail. You know? It’s one more fail and that has happened to some of my friends
who have ultimately killed themselves. My day with Katie and her friends has me
feeling uncertain and unsettled What I do know is that all the women are sufferring It really erodes your
will to want to live, because it’s such a suffering and
all-encompassing type of suffering. And that’s why people suicide. They get tired of the fight. Today, when we were leaving Katie’s,
Joan, one of Katie’s friends, handed me this folio, this says Morgellons on it. In here, she’s given us samples of these
fibers. A long, black fiber of some sort. I really don’t know what
to say about this stuff. So I met with a Morgellons patient who gave me an envelope of samples and was hoping to show them to you to get
a sense of whether they are real. of what they are? Sure. Here’s one sample,
it’s from like a decade ago. This looks like just a big hair to me. Looked like they probably were stuck
as contaminants on a lesion though. Do you feel like you wanna just
go to these patients and say, please don’t bring in any
bags of hair to your doctors. Yes! and I give lectures on that. They might mistake the filament for
a parasite. They might pick up
environmental contaminants. They really have the condition. They really have the filaments. And yet they become so obsessed about it, that they begin to think everything is related to it. As a scientist, when you look at that
slide, and you put it in the microscope, and you see that beautiful spirochete
there, that is not supposed to exist, and it’s supposed to be a delusional
mental illness, you can’t help but get very excited by that. Katie says she tested negative for
Lyme, but positive for a similar strain of the bacteria. She’s now taking antibiotics on and off. She says it helps somewhat. I use a far infrared sauna. At first, I thought it was the craziest
looking thing I’d ever seen. I did start to feel better
when I was doing it every day. And I feel more comfortable in my skin now which is
so ironic but I trust myself more like, I knew something was wrong and
I was right. So it seems wild and establishment research is firmly against it but Morgellons advocates will tell you that the medical community has a long history of disbelieving real illnesses. And neglecting their pain,
especially when it disproportionately affects
women like Morgellons. And so
patients still seek their own answers when doctors say it’s all in your mind.